Research project

Title: Survey of views of people affected by Motor Neurone Disease on the only drug treatment available - Riluzole.

Project timescale: From 01 November, 1999 to 01 June, 2000
(Added to website on: 20 April, 2001 - Date last updated: 20 April, 2007)

Source of funding:
MND Association

Aims: To assimilate the views of people affected by Motor Neurone Disease on the only drug treatment available - Riluzole - in order to inform the Association's submission to the National Institute for Clinical Excellence (NICE).

Research designs used:
Study of views/experiences

Methods used to collect data:
Interviews
Questionnaire survey

Research project description: Qualitative research was carried out by the College of Health in November/December 1999. This was used to draft a questionnaire which was mailed with a membership publication in April 2000. 800 replies received.

Stages at which the public were involved:
Designing the research instruments
(eg questionnaires, patient information sheets)
Prioritising topic areas

Description of public involvement in research stages: Consumers were consulted on the design of the research instruments, questionnaire etc.

Training and support provided for either members of the public or researchers involved in the project:

Examples of ways the public have made a difference to the research project: Made it more user friendly.

Evaluating the impact of public involvement in the research:

Details of publications or reports resulting from the research: No Articles currently available

Was/is your project user controlled: Not Known

For further information on the project, please contact:
Ms Alison Morris
Co-ordinator
Motor Neurone Disease Association
PO Box 246
Northampton
NN1 2PR
alison.morris@mndassociation.org
01604 611842

Website: www.mndassociation.org

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